It's Beginning to Look A Lot Like Fun*Run Time
Monday, January 31, 2011
Saturday, January 29, 2011
This picture above [2 street signs on a pole, the one pointing to the left says questions and the one to the right says answers] from Ellen's post last month on Love that Max inspired this post. Eva and Jenni both have question and answer segments on their blogs, maybe I will too. Although I've never felt all that curious, and I assume that most of my readers have disabilities, maybe you don't. Or maybe you do and still have a question. When doing a self-advocacy training for teens/20 somethings with DD, a woman with a DD stopped me during my intro and said "I've heard all people with bipolar are violent." A valid assumption given media. So ask away in the comments and I promise to get back to you in a post sometime in the future. When I have writers block it'll give me something to write about.
Thursday, January 27, 2011
I've been meaning to post this since October when Tanis posted about Jumbly's botox appointment. She called the post The Steel-Toed Boots of Motherhood. I read it and thought about other moms that have written about botox, like Ellen and Kathryn. All three of their children have cerebral palsy, all three write about their children's botox appointments with angst, and I wonder why. I am somewhat flummoxed. I thought I wrote a post over a year ago, Botox Day: It's Like Christmas, but apparently I never did. OK, I don't know anything about Christmas (remember, I'm Jewish), but as my appointment gets near I start counting down the days.
Tuesday, January 25, 2011
"This is bullshit ... I'm pissed off ... I-I'm pissed off. 'Cause you're being -- You're being... Y-you're -- You're a pussy. You're, like, ready to give up ... What if you gave up on me, huh? This here [he picks up one of his crutches], all the stuff I've been through, and y-you're scared of a little chemotherapy?"That little speech gave me a flashback. Brought me right back to when I was 8 years old and my grandfather, 67 at the time, was diagnosed with prostate cancer. They cut it out and he was fine for the next 10 years, until he died of a massive heart attack.
"Grandpa you're a WUSS!" I shot back.I think I was too young to know the word "pussy."
Sunday, January 23, 2011
Friday, January 21, 2011
From the MD Daily Record, written by Joe Surkiewicz, published Jan 2, 2011
BALTIMORE, MD -- While most of the 25,000 residents living in Maryland’s 234 nursing homes would prefer to receive services at home, the overwhelming majority languish in institutions.
That’s largely because they don’t know their options.
But thanks to The SunShine Folk, that’s changing.
The SunShine Folk are a group of former nursing home and state institution residents who reach out to residents in nursing homes and educate them about their options for receiving long-term care at home.The group was launched by Maryland Disability Law Center in 2005 as a collaboration between people with disabilities who provide hands-on peer support and the MDLC, which provides the legal expertise to help secure the Medicaid waiver services needed for them to live independently.“The SunShine Folk help facility residents choose and apply for Medicaid programs and advocate for themselves in the transition process,” said Gayle Hafner, a senior attorney at MDLC. “MDLC staff work to remove legal barriers in the more difficult cases.”This successful partnership between legal professionals and grassroots advocates has enabled hundreds of people with disabilities — including seniors and individuals with significant support needs — to fulfill their dream to move from an institution to the community and “get their lives back.”It also makes economic sense.“Any time it costs the state $85,000 a year to live in a nursing facility and only $40,000 a year at home, coming home is the way to go,” said Floyd Hartley, a leading member of The SunShine Folk. “I was in a nursing home for three years and never knew about waiver services until I met Gayle [Hafner]. It allowed me to come home and get the same level of care — actually, better care that is much more individualized.”The group not only serves individual clients but also has its collective fingers on the pulse of the state’s progress in rebalancing its long-term care system away from over-reliance on facility-based care.The SunShine Folk have gained experience, knowledge and savvy and have positioned themselves to advocate successfully for systemic reforms that help improve the lot of many people who remain stuck in institutions.Furthermore, the program serves people who face complex legal hurdles, have intensive-care needs or face other barriers to freedom from facility-based care requiring skilled and sustained assistance.“Experience tells us that the majority of individuals the SunShine Folk have helped to free would still be stuck in institutions, but for the program’s tenacious outreach and persistence,” said Kim Stevens, an MDLC paralegal who works closely with The SunShine Folk.“Although most individuals prefer to receive services at home, Maryland spends about 85 percent of its Medicaid funds on institutional care,” Stevens continued. “Maryland spends only 15 percent of its Medicaid long-term care monies on home and community-based services and supports for seniors and individuals with disabilities, ranking it near the bottom among states in home-care services spending for this population.”A federal demonstration grant, Money Follows the Person, attempted to address this imbalance. Due to the success and advocacy of the SunShine Folk, the state attempted to incorporate peer outreach contractors, program education and waiver application assistance into its MFP operational protocol.“The sustained monitoring by The SunShine Folk clearly reveals that the state’s initiative falls far short of the intent,” said Hafner, the MDLC attorney. “Nearly 100 percent of the residents who connect with The SunShine Folk choose to initiate a waiver application, while only 30 percent of those who interact with the state’s program educators choose to do so.”At least part of the reason is that the state’s contractors are restricted in the information they can share and are less committed to helping people find their way home.The SunShine Folk, on the other hand, are able to respond to all of the residents’ concerns and requests for information, and support the individuals throughout the transition process.“Just within the past few months we have made several presentations at conferences about this peer model of mentoring, and people are always asking how to replicate the model for other projects or in other states,” Hafner said.“The SunShine Folk have been an invaluable resource, an on-the-ground eyes and ears for many advocacy groups,” she continued. “The state policymakers recognize The SunShine Folk’s real-life experiences and actually listen to them because of their knowledge, dedication, and commitment.”The SunShine Folk keep hope alive for people during a complicated transition.
“Sometimes the social work aspect of transitioning a person with complex needs requires more resources than a legal services agency is equipped to offer,” Hafner noted. “The SunShine Folk can be the knowledgeable, one-on-one contact and mentor for someone during the entire process, from thinking about the possibility of transition, all the way through settling into a new home in the community.”Added MDLC executive director Virginia Knowlton: “You can replicate the model, but not the passion for the work and sincere desire to help people find their way out to the community that our advocates have. This is an effective collaboration that grew organically from the ground up in response to a pressing human need.”For information about The SunShine Folk project, call Knowlton at 410-727-6352.Joe Surkiewicz is the director of communications at Maryland Legal Aid. His e-mail is firstname.lastname@example.org.
Wednesday, January 19, 2011
Monday, January 17, 2011
Everybody can be great, because everybody can serve.
You don't have to have a college degree to serve.
You don't have to have to make your subject and your verb agree to serve.
You don't have to know about Plato and Aristotle to serve.
You don't have to know Einstein's "Theory of Relativity" to serve.
You don't have to know the Second Theory of Thermal Dynamics in Physics to serve.
You only need a heart full of grace,
a soul generated by love,
and you can be that servant.
Saturday, January 15, 2011
When I saw that this month's DBC was being held in conjunction with MLK Jr Day, something deep inside of me got mad. I wasn't upset that the carnival is Monday. In fact I thought that was a great idea. I don't have anything against MLK Jr at all. In fact, ADAPT has long considered his birthday (today) to be "Freedom Day." We're down with him. What angers me is why some people aren't down with us.
I don't know how people viewed Black Civil Rights leaders during the 1960's, when everything was going on. I wasn't around in the 60's, I'm 25. I imagine things were viewed differently depending on which geographic region of the country you resided in at the time. What I do know is that now, in 2011, and for at least the last 20 years, Malcom X, MLK, Nelson Mandela (yes, I know he's not American) have been regarded as national heros, while I am regarded by some people as a freak.
Please explain to me why blocking a bus with a powerchair is different then refusing to get up from the front of a bus. Please explain to me why yelling outside of an inaccessible McDonald's (that link is in Mandarin, use Google Translate) is different then refusing to get up from a lunch counter?
Did people tell MLK to just "be nice?" Not just people, but Black people. HIS people. I'm sure some did. I've been looked down upon by other PWDs, wheelchair users, been instructed to "be nice." I've gotten in arguments with certain PWDs (those old friends), who don't agree with how or why I do the things I do, so often that we no longer speak. Being nice in my experience rarely gets you what you need, your civil rights. IN YOUR FACE does.
MLK Jr said
We who in engage in nonviolent direct action are not the creators of tension. We merely bring to the surface the hidden tension that is already alive.I'd have to agree with this. People are scared of people with disabilities. Especially people with very visible physical disabilities and significant psychiatric disabilities -- people who cannot pass. People are scared, fearful of what is different; of what they do not know. By making our very visible selves even MORE visible we are intensifying this fear. I get that. That explains why TABs get nervous around ADAPTers, but that doesn't explain why some PWDs are put off by us. We're not any more different then they are.
I think PWDs are put off by me (us) because by hanging out with people who do things such as handcuff themselves to the White House fence, I challenge their reality, how they were raised, the ways they think are the "right" ways to be a PWD. Don't call attention to your disability. Don't ask for "special" treatment. Be nicer then other people. You should be grateful for what you do get. Etc.
My parents taught me not to settle. My parents taught me separate is not equal. My parents taught me that sometimes to get what you need you have to stop being nice and start being FORCEFUL. My parents taught me this when I was 5. And my mother wonders why I'm so into ADAPT... But that's another topic and story entirely...
The theme for this carnival is "let your freak flag fly." I'm different. I'm a radical. I challenge not just the "norm" but I also challenge the "atypical." ADAPTers call ourselves "wild and weird ones." I wear that label with pride. But I'm not a "freak" in the way that people who judge me intend that word to be meant.
Why are Malcolm X, MLK Jr, and Nelson Mandela national heros but not Ed Roberts and Justin Dart Jr? We are the same. We do the same. We're not freaks. We're also a very creative dedicated minority hell bent on making the world a better place.
Friday, January 14, 2011
that today is the first day of One Month Before Heartbreak, I post The 12 Days of CRIPmas
Wednesday, January 12, 2011
Monday, January 10, 2011
I think I got it wrong last year. Delurking week is the second full week of the year, not the first. If you want to participate on your own blog just google image delurking week. There are all kinds of great images to choose from besides this cat, which is so adorable I just want to take it home with me.
COME OUT, COME OUT WHEREVER YOU ARE!
Saturday, January 8, 2011
This was posted on FB Jan 1
It's that time of year where a bunch of folks make New Year's resolutions. Most resolutions are things like lose weight, work out, be on time, and procrastinate less...So what have your representatives in Congress resolved to change in 2011? We all KNOW they will give up working out by mid-January (if it lasts that long), will gain back 10 pounds after losing five, and will continue to be late to everything. Of course, they will find a hundred reasons to put off working on that procrastination resolution. So rather than waste this opportunity, THEY SHOULD RESOLVE TO ELIMINATE THE INSTITUTIONAL BIAS!We contacted the Congressional candidates during the election and a number of them pledged to eliminate the institutional bias, but a lot of these folks didn't. Congress is about to come back into session, se we need to make sure that they know we want them to free our people.We've posted a Congressional New Year's Resolution you can use to ask your members of Congress to end the institutional bias. The Congressional New Year's Resolution is at: www.cdrnys.org/resolution.We know this will be a tough Congress to work with, but there is widespread support for this issue within the disability community. Every major national disability organization supports ending the institutional bias through the Community Choice Act. There is support for it beyond the disability community as well. We have estimated that the cost of CCA to middle class folks is only about $6 a year. Giving seniors and Americans with disabilities their freedom would cost as little as a big cup of coffee. And based on a Harris survey (click to see the fact sheet), 89% of those surveyed supported the legislation.We are working with Congress on reintroducing the legislation, but we aren't waiting to ask our Senators and Congressional representatives to sign on and support it. Please give them a call or send an email asking them to make a New Year's resolution to eliminate the institutional bias.FREE OUR PEOPLE! -The ADAPT Community
Thursday, January 6, 2011
The US Food & Drug Administration holds a meeting about electroshock deviceThe US FDA announced that on January 27 and 28, 2011, a US Food & Drug Administration committee will "discuss and make recommendations regarding the possible reclassification of devices indicated for use in electroconvulsive therapy."what Forumwhen Jan 27, 2011 08:00 AM to Jan 28, 2011 06:00 PMwhere Gaithersburg, MDcontact name James Engles, FDAcontact phone 301-443-0572 code 3014512513attendees All are welcome.US Federal Committee To Have Meeting About Electroshock DevicesLocation of FDA meeting:Hilton Washington DC North/Gaithersburg, Ballroom, 620 Perry Pkwy, Gaithersburg, MD.More info from FDA web site:Background:~~~~~The FDA has appointed an advisory committee to assist it to determine if electroconvulsive therapy (also known as electroshock) devices will be moved from Class III to Class II, or as many have proposed, to require the manufacturers to submit a "Pre-Market Application" which they should have been required to do 35 years ago.If the Committee agrees to downgrade the risk of ECT to Class II, it will be more readily available, and the manufacturers may never have be required to prove either that it is safe, nor that it is effective.ECT survivors may briefly speak to the committee in this public meeting to provide their story or perspective on the harms caused to them by ECT.Communication of long term harms is especially important, as the manufacturuers and ECT advocates are minimizing ECT long term ill effects - such as long term memory loss, as well as long term effect of reducing ability to learn and remember new information.The FDA states that persons wishing to speak at this important meeting may contact James Engles at James.Engles@fda.hhs.gov. While a deadline of 14 January is listed to ask to speak, the sooner the better.There will certainly be psychistrists and manufacturers representatives and others claiming ECT is a life saving treatment. The Committee needs to hear from people who know the true risks of electroshock.
In order to help keep you more informed, we are hosting monthly calls to update you on various disability issues as well as to introduce you to persons who work on disability issues in the federal government.This call is off the record and not for press purposes.We strongly urge and ask that you distribute this email broadly to your networks and list serves so that anyone who wants to participate can do so.Our next call will be Monday, January 10 at 3:00 PM Eastern.The conference call information is below.Dial in: (800) 230-1093Title: Disability Call (use instead of code)Date of Call: 01/10/2011Start Time: 3:00 PM EasternFor live captioning, at time of call, log onto:Again, please distribute widely.
Tuesday, January 4, 2011
Sunday, January 2, 2011
One Month Before Heartbreak is taking place from 14th – 16th January 2011. This is a blog swarm (or blog carnival) style event somewhat similar to Blogging Against Disablism Day (BADD). A Blog swarm is where people come together to post on their own blogs about the same issue and then share the links on a master list.Drastic cuts have been announced in the UK to help reduce the monetary deficit. The proposed cuts appear to disproportionately target the more vulnerable members of society, including disabled people. When the cuts were first announced the government freely admitted that they hadn’t carried out a full analysis of the likely impact on disabled people.The cuts include:
- Removing Higher Rate Mobility Allowance from people in care homes, a move which is likely to make many people prisoners in their own homes (and possibly in their bed in some cases as HRM can also be used for specialist powered wheelchairs).
- Changes to the way Disability Living Allowance (DLA) works. One of the proposed changes is that all existing claimants should undergo a medical to ensure people aren’t receiving it when they aren’t entitled. A costly and potentially pointless exercise as medical evidence is needed before DLA can be awarded and some claimants go for medicals anyway. DLA also has one of the lowest fraud rates of all benefits in the UK – I’m not a benefits expert but I have an incurable, lifelong disability – and an indefinite DLA award, I’m probably one of thousands of DLA claimants in similar circumstances. Sending me for a medical would cost a lot of money and achieve nothing that the forms and medical notes my doctors have provided hasn’t already done. All in the name of trying to save the government some money.
- Another change to DLA that is being considered is changing it to something called PIP (Personal Independence Payment). With DLA if you have certain conditions your disability is recognised and you get it automatically. If you are considered terminal there is a fast track system. PIP as it’s been described appears to have neither of those safeties. One of the main things which would be looked at with that would be how well you can use aids and equipment. For example, it’s pretty obvious that a wheelchair user has some mobility problems, if they didn’t they wouldn’t use a chair, after all. But under PIP rules they could be ruled to have no problems with mobility if they can use their wheelchair independently.
- Council funded care has been cut. The Independent Living Fund is ending which could force more people into care homes.. Access to Work has had greater limits placed on what it can provide which will make it harder for disabled people to find work and potentially may mean some disabled people who are working have to stop. Free bus passes are being withdrawn making transport more difficult. We are treated by the government as second class citizens and hate crimes are increasing.
- There are other cuts planned. The 12 Days of Cripmas is a topical take on an old Christmas carol and lists many of them. Chilling but well worth a watch.The Broken of Britain is a non party political group which was set up by Bendy Girl to help give disabled people a voice in fighting these cuts. Many disabled people and our allies have shared their story, e-mailed their MPs or done whatever they can to help out the cause since it was launched. One Month Before Heartbreak is one of the projects we are doing this year.As I said above it’s a blog swarm which means people getting together to all blog on a subject or a theme at a specified time. The hope is that by all writing at the same time it raises awareness and makes more of an impact.The consultation that’s currently ongoing about DLA reform ends on 14th February 2011. Which is Valentines Day, traditionally a day for love but which could severely affect disabled people if DLA reforms aren’t handled correctly. We need to ensure that our voices are heard. We’re holding this event a month before the consultation ends in order to raise awareness of the consultation and give people to chance to respond to it if they wish. Bendy Girl came up with the name One Month Before Heartbreak.If you want to take part, write about whatever you want. Obviously, it should have something to do with disability and it would be great if you could mention this event and Broken of Britain. You don’t need to write specifically about the DLA consultation and your personal experience. Those are welcome but this isn’t topic specific. You can participate on one of the days or on all of them – it’s up to you.Nor do you need to write. You can do a video, a recording, write a poem, draw a picture, anything you want! Sharing links and supporting those blogging is also very helpfulI [Emma] plan to make space available on my own blog [A Writer in a Wheelchair] to anyone that doesn’t have somewhere to share and wants it.You don’t need to be disabled or a carer or come from the UK to take part. For our cause to be successful we need support from the international disabled community and from the non disabled community worldwide.The full details of One Month Before Heartbreak (as they stand now) are available here
Saturday, January 1, 2011
I think I saw someone do this last year, but I don't remember who. Here is the first sentence of my first post of every month of 2010: